Did you know that 70 percent of Americans have thought about end-of-life preferences, yet only 29 percent have completed an advance directive? Did you know that while 70 percent of people say they would like to die at home, 70 percent die in hospitals?
At present, conversations about end-of-life wishes happen all too often for the first time in an ICU around a patient’s bedside, prompted by daunting questions such as, “If your husband’s heart would stop, do you want us to start it again?”
This is the last question someone wants to take responsibility for making for someone they love. Siblings disagree, decisions are delayed, and regrets over the things that should have been said surface.
All of this time the patient lies in bed in discomfort, with diminished quality of life, having procedures they may not have wanted, in a place they never wanted to die in. We all know that death is inevitable, but is this the kind of death you would hope for?
As a community, we need to grasp that although we do not have control over IF we die, we can take charge of HOW we die. Advance care planning is about making these wishes known to your loved ones. Anyone who has been at a bedside of a person who has passed away knows that death is not exclusively a medical event.
And so these conversations need to focus not only on preferences for medical treatments but also on values, what you consider quality of life, how comfortable you want to be, how you want to be treated, and what you want your loved ones to know. These conversations require time and thought and are truly most valuable when they occur when a person is healthy, before an illness or injury.
How do we move our culture from avoiding the topic to embracing it? Multiple approaches need to be taken. Many are already in process. As a nation, every April 16 we celebrate National Healthcare Decisions Day. On and around this day community groups, churches, healthcare institutions, and other gathering spots are encouraged to host community programming on starting the conversation.
The media is starting to change — think of the recent movie “The Descendants,” the coverage of Randy Pausch’s last few months, and the upcoming “Death and Dying” series.
These and other thought provoking stories could easily be used as conversation triggers. A wealth of information is available on the internet as well as on advance directives, starting the conversation, frequently asked questions, etc.
In health care, the responsibility for this discussion needs to rest on both the PCP and the patient. Our PCPs need to not only ask us if we have an advance directive — a legal document setting forth your decisions about end-of-life care — but also educate us on why it’s so important to do one now. The right time and place to hear this from a medical provider is during a “well visit,” not in the hospital. Checking to see that a patient has an advance directive should be as normal as checking their list of current medications.
Because the conversation can even be difficult for physicians, as educated consumers we have a responsibility to initiate it as well. The comfort level with having the conversation will increase as it becomes more commonplace; this is how real culture change happens.
Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Don’t wait for the culture change to start the conversation; start it today.
Tamra Minnier is the Chief Quality Officer at the University of Pittsburgh Medical Center.